Lymphangiosarcoma is thernany treatment

FormerMember over 5 years ago

2 replies
24 subscribers
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My wife had breast cancer 8 years ago and this came back as a secondary in her spine 12 months ago

we are dealing with this and it is being kept at bay

approx 5 months ago she started getting what we thought was bruising on her arm , this has spread all on her arm and is blistering , to cut a long story short we have been told she has a very rare cancer called Lymphangiosarcoma and yesterday the dr who did the biopsy referred her to a specialist, he’s been a breast cancer surgeon fo 30 years and never had a case

When she asked if they could amputate her arm due to the severe pain he said no and told her to not get her hopes up as far as he is aware there’s no treatment, I’m hanging on to the thought that he might be wrong and when we see the specialist he has something he can do

has anyone come across Lymphangiosarcoma before ...is there any hope

my wife is being so brave

FormerMember over 5 years ago

Hello , welcome to the online community. I am sorry to hear of your wife’s diagnosis, I had to look up the term Lymphangiosarcoma, as I hadn’t come across it before, (I have a different cancer), so I am falling short on you request for experience.

I noticed that you have already posted in the ask an expert section which is what I was going to suggest to you, so well done. I can imagine that the waiting is quite stressful for you, as I know that is how I have felt when in a waiting period. The ask a nurse section can take two days to get back to you so you may want to consider using the Macmillan support line as well to talk through your concerns (0808 808 0000 open 8am to 8pm).

I also noticed that you have joined the carers group and supporting someone with incurable cancer, the other two suggestions I was going to make. At my hospital there is a Macmillan booth near oncology and a Maggies Centre on the hospital grounds as well. When I have had a stressful talk sometimes with an oncologist and needed time to process it I’ve popped in to have a word to let things seep in.

Best wishes

FormerMember over 5 years ago in reply to FormerMember

Thank you for your reply

I’m new on here so just trying to find my way around the site

part of the problem is it’s very rare and not much information on line , the information that is there is pretty scary

just hoping someone might have some information I can pass on to my wife

Thanks for taking the time to reply